Giving Voice to Patients' and Family Caregivers' Needs in Chronic Heart Failure: Implications for Palliative Care Programs

Bekelman, David B.; Nowels, Carolyn T.; Retrum, Jessica H.; Allen, Larry A.; Shakar, Simon F.; Hutt, Evelyn; Heyborne, Theresa; Main, Deborah S.; Kutner, Jean S.

doi:10.1089/jpm.2011.0179

Cited by 90 publications

(87 citation statements)

References 38 publications

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“…Other studies have reported similar findings pertaining to the earlier timing of PC. [50][51][52] This point was further emphasized in our formative evaluation by the fact that two patients experienced sudden, unexpected cardiac death within two weeks of enrollment, before the CYC sessions were started, and another died six weeks after enrollment just after completing sessions. Though the sample size was small, we experienced an almost 30% sudden death rate.…”

Section: Discussionmentioning

confidence: 99%

Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers

Dionne‐Odom

KonoAlan

FrostJennifer

et al. 2014

Journal of Palliative Medicine

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Background: Heart failure (HF) and palliative care (PC) organizations recommend early PC to improve the quality of life of patients living with HF. Objective: We conducted a two-phase formative evaluation study to translate a cancer-focused concurrent PC intervention into one that would be appropriate for rural-dwelling adults with New York Heart Association Class III-IV HF and their primary caregivers. Methods: Phase I: We tailored the intervention for an HF population via literature review, expert consultation, and clinician (N = 15) small group interviews. Phase II: We enrolled 11 patient/caregiver dyads to assess intervention feasibility and satisfaction. We assessed participants' experiences and satisfaction after session/ week three and session/week six via digitally recorded interviews. Clinician and participant interviews were transcribed and content analyzed. Outcome measures were evaluated for completion rates and effect sizes. Results: Phase I: Clinicians described barriers to initiating PC in HF, triggers for initiating PC, and suggestions for intervention improvement. Phase II: Participants were able to complete the majority of study sessions, measures, and interviews. Satisfaction interviews revealed the content to be relevant and comprehensive in addressing HF patient and caregiver primary concerns; however, participants unanimously suggested making the intervention available earlier in the illness trajectory. Efficacy measures demonstrated small to medium effect sizes. Conclusions:We tailored and demonstrated feasibility of providing an early, concurrent palliative care intervention to patients with advanced HF and their caregivers. Based on this experience we are now conducting an efficacy trial in a racially diverse sample.

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Section: Discussionmentioning

confidence: 99%

Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers

Dionne‐Odom

KonoAlan

FrostJennifer

et al. 2014

Journal of Palliative Medicine

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“…4 Because of this unpredictability, patients and their families face numerous uncertainties in the future, such as whether they can work, take trips, or attend family events. [5][6][7] Such unpredictability also poses challenges for advance care planning. For example, in our earlier study to identify palliative care needs and support preferences in heart failure (HF) care, some participants and their informal (family) caregivers avoided discussing the future because the future was so uncertain.…”

Section: Introductionmentioning

confidence: 99%

“…For example, in our earlier study to identify palliative care needs and support preferences in heart failure (HF) care, some participants and their informal (family) caregivers avoided discussing the future because the future was so uncertain. 6 Thus, the nature of HF makes it particularly important to understand how patients and their caregivers perceive their changing health and healthcare needs, and how these perceptions relate to concerns and questions about what lies ahead.…”

Section: Introductionmentioning

confidence: 99%

The Future as a Series of Transitions: Qualitative Study of Heart Failure Patients and Their Informal Caregivers

et al. 2014

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BACKGROUND: Advance care planning often only focuses on written advance directives rather than on future goals important to patients and families. Heart failure has a particularly uncertain future with variable clinical trajectories. A better understanding of patient and family concerns about and perceptions of the future could improve advance care planning. OBJECTIVE: We aimed to identify how patients with heart failure and their informal (family) caregivers perceive their future. DESIGN: This was a cross-sectional study using qualitative methods. PARTICIPANTS: Thirty-three patients from an academic health care system with New York Heart Association class II-IV heart failure and 20 of their informal caregivers participated in the study. We used a purposive sampling strategy to include patients within a range of ages and health statuses. APPROACH: Participants were asked in individual, semistructured interviews: "When you think about what lies ahead, what comes to mind?" Qualitative analysis used an inductive approach. Early in the analysis, it became clear that participants' narratives about the future were described in terms of past transitions. This led us to use transition theory to further guide analysis. Transition theory describes how people restructure their reality and resolve uncertainty during change. KEY RESULTS: Patients and their caregivers talked about past and present transitions when asked about the future: "The present gets in the way of talking about the future." We identified four common pivotal transitions, including the shock of first being diagnosed with heart failure; learning to adjust to life with heart failure; reframing and taking back control of one's life; and understanding and accepting that death is inevitable. Concerns about the future were framed based on the most recent transition. CONCLUSIONS: Heart failure is a series of transitions according to patients and caregivers. By recognizing and educating patients about transitions, identifying transition-specific concerns, and supporting patients and caregivers through transitions, the process of planning for the future as part of advance care planning may be improved.

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“…Caregivers expressed need to understand the illness milestones and the disease progression. They wanted to be made aware of what would be a concerning point along the illness course or what resources would be needed by the patient [8].…”

Section: Discussionmentioning

confidence: 99%

“…The understanding of symptoms patients will experience on a daily basis was the third point. Incorporating advanced care planning would assist on providing a prospective about the uncertainties of heart failure [8].…”

Section: Discussionmentioning

confidence: 99%

The Benefits of Palliative Care Interventions for Patients with Heart Failure - A Literature Review

Hnyda¹,

Avadhani²

2017

J Palliat Care Med

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Palliative care is an underused resource with the heart failure patient population. Many of these patients suffer not only from physical alignments but mental, spiritual and financial ones. Heart failure patients face many challenges such as frequent readmissions and a declining quality of life. This not only affects the patients but their families as well. Early palliative care intervention can decrease hospital readmissions and improve quality of life. Although advances in medicine have allowed for the heart failure patient to have more options in prolonging their life, sudden cardiac death may still occur. This uncertainty with the trajectory of death makes it difficult for some health care providers to initiate early discussions of palliative care. Many heart failure patients and their families see heart failure as a benign disease which makes it seem unnecessary for early palliative care interventions. Palliative care, by some people, is perceived as imminent death and not as an improvement to the quality of life. These patients are not being offered appropriate palliative care until their disease has exhausted all treatment plans. Many medical providers do not feel comfortable discussing early palliative care interventions, which in turn can lead to the lack of initiation into the patient's heart failure treatment. Implementing a multidisciplinary team approach will allow cardiologists to work with other health care team members to provide for the highest quality of life. The purpose of this paper is to review the implementation process and benefits palliative care services offered to the heart failure patient community.

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Giving Voice to Patients' and Family Caregivers' Needs in Chronic Heart Failure: Implications for Palliative Care Programs

Cited by 90 publications

References 38 publications

Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers

Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers

The Future as a Series of Transitions: Qualitative Study of Heart Failure Patients and Their Informal Caregivers

The Benefits of Palliative Care Interventions for Patients with Heart Failure - A Literature Review

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